Beth McCartney and her partner were hugely excited when she became pregnant with their first child. Five months along, their thoughts were of carry cots, colour schemes, baby names and their future as a family. Earlier in the pregnancy, blood tests had not shown any increased risk of neural tube defects, a group of congenital abnormalities. Things were looking good. And then came the 20-week scan, normally a cause of celebration. McCartney, then 25, was told that her baby had spina bifida and severe, extensive brain damage.
She works with children who have disabilities and knew the outlook was very bleak. Meanwhile, her partner looked on the bright side. He was convinced they would cope, she recalls. "When he said, 'We can just get a ground-floor flat,' I realised he thought all it meant was that [the child] would be in a wheelchair, I just thought, God, you don't get it. He thought he was going to get a child that couldn't walk, rather than a child who couldn't be anything."
After two highly charged days seeking additional medical opinions, they decided to end the pregnancy. "I was 20 weeks and five days," says McCartney. "We knew once we got to 21 weeks, we would have to kill her."
When pregnancies over 21 weeks are terminated, medical opinion is that the baby is best born dead. This means injecting potassium chloride into the baby's heart, a procedure called foeticide, before labour is induced. That thought was unbearable, so McCartney was induced and her baby was born alive, only to die soon after birth.
Each year 1,800 women opt to end their pregnancies because of foetal abnormality. Although you may know someone who has been through this searing experience, the chances are that they kept it from you, as they will have done from everyone but those closest to them. The fear of being judged, of being found wanting at such a basic level, is too heavy a burden to add to the one they already carry. So people keep quiet and termination due to foetal abnormality remains one of the last taboos.
When McCartney told a colleague what she had done, he called her a eugenicist. "People make snap judgments. They assume you're selfish," she says. "I look at the children at work and think, yes, but would you choose to put a child here? I couldn't do it."
Like other parents in her position, McCartney hates the word abortion to describe her situation because it's normally used in cases of unwanted pregnancy. These terminations are so late because most anomalies are discovered not in early pregnancy but at the 20-week scan. There is no upper time limit on termination of pregnancy where there is severe foetal handicap. Of the 700,000 women who get pregnant each year in the UK, 35,000 will be told that there is a risk that the baby may have some form of abnormality. For most, further tests and days or even weeks of agonising uncertainty will end with good news. But for the rest, the prognosis is not good, made more painful by the fact that the 20-week scan is generally treated as a celebratory meet-your-baby moment.
Couples are rarely prepared for bad news. Despite the purpose of anomaly screening being clearly explained, the negative possibilities are a spectre firmly banished from consciousness. Only a few will have thought through the consequences and these women may have opted out totally. Most say, "We'll cross that bridge if and when we come to it," while crossing their fingers that they never will. "It hits everybody hard at a gut level," says Helen Statham, senior researcher at the Centre for Family Research in Cambridge, who has conducted the largest study of women's experience of termination of abnormality.
For Paul Burgess, 39, and his wife Sarah, 32, both company analysts, the diagnosis of heart abnormalities was a bolt from the blue. Their first pregnancy, a son conceived at the third IVF attempt, had been normal. They were thrilled when their second pregnancy was naturally conceived. The triple test at 16 weeks - a blood test which assesses the likelihood of Down's syndrome and spina bifida - had given them a one in 12 risk of Down's, but a subsequent amniocentesis produced an all-clear result, so they went excitedly in for the 20-week scan expecting everything to be normal. Instead, they were told their baby girl had serious heart defects and other complications.
"We were very upset but tried to take on what they were telling us. Because of the work we do, we reverted to being analytical and were asking for hard facts," says Burgess.
But there were no firm answers. If the baby survived, she would need immediate surgery and if she made it through that, there would be more operations. If she reached her teens, she would need a heart transplant.
Despite the uncertainty, their minds were made up. "That was no life at all for our little girl," says Burgess. "Before we even talked, both of us knew what our decision was going to be because we didn't want to inflict that on her, or us, or on our little boy."
The termination was rushed through before the 21-week limit. "We had no time," says Burgess, "but in some ways, we didn't want any more."
For many such parents, the world can be a lonely, isolated place. Yet they often do want to talk, as researchers on a health project found. A new wing of the website Dipex (a research project and charity that collects individuals' experiences of health and illness) is launched today, featuring testimonies from people who have terminated pregnancies due to foetal abnormality.
Reading through the 40 or so stories dispels the notion that this could ever be a black and white issue. There are all shades of grey here, linked by shared pain and grief. Over it all looms the unanswerable question: is it right? Perhaps Burgess speaks for all concerned: "Those people who say, 'I couldn't do that' have never been there." Some names have been changed. dipex.org Antenatal Results and Choices (ARC) support and information line: 0207-631 0285, 10am to 5.30pm, Monday to Friday, arc-uk.org
'Those people who say "I couldn't do that" have never been there'
